Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Wednesday, February 11, 2015

Disability and Travel: A Time Drain

Part One

I love to travel. I enjoy travel the most when I am accompanied by a typical bipedal person. For many who travel with me the experience is an eye opener. Frankly, I take great delight when my friends express shock when I am demeaned by TSA employees, hotel workers, airline personal and a host of others one must deal with when accessing planes, trains or a rental vehicle. Travel rarely goes as expected. The brief trip I am on now is a perfect example of the disparities for those who use a wheelchair. I tried to travel from Syracuse to Chicago but it proved to be far too costly. I decided to drive to a motel near Kennedy airport, stay one night and leave on an early morning flight. Hotels and motels near Kennedy are a mixed bag. I chose a Best Western. The price was right and it was 10 minutes from Kennedy. I had severely limited expectations. I hoped for a clean room, decent towels and a roll in shower. Upon arrival I encountered an all too typical reaction—shock. Oh my God a person using a wheelchair is checking in. I have no clue what to do. Many buttons are pressed on the key board. Confusion reigns supreme. The fact that I made the reservation online and spoke to the manager somehow has been completely lost. Ten minutes later after much consternation I am given a key. I go up to the room—a room with a roll in shower. Sorry but no. It is an accessible room-sort of. No roll in shower. No way to lower the shower head. One misplaced grab bar. I am paying well in excess of $100 and I cannot take shower? Not a chance. I go back down stairs and tell the desk person I need a room with a roll in shower. At least another ten minutes is spent tapping on the key board. The desk person then leaves and tells me he will be back. He comes back 5 minutes later and I am given a new room with a roll in shower.

Much to my delight I meet a friend who witnessed the above. We get to the room after navigating a hall way that smelled of strong industrial cleaning products. Who knows what that smell is masking? Put that thought out of my mind. The accessible room is accessible to any slender person using a manual wheelchair. It is the smallest and narrowest room I have seen in many years. The room was massively over heated and severely cramped. My friend looked when we got to the room and said “what the fuck”. We had a good laugh. and I said welcome to land of disability. I am such a valued customer I get to spend about 30 minutes checking in and get the room I reserved on the second try. I am calm the entire time. I get it. It is just one night and what can you expect from a cheap national hotel chain. Again, my expectations were low. The room is clean and I can shower. Ah the bathroom. This is a first. There were no heating ducts in the bathroom. Now I am far from a guy that likes a bathroom or hotel room warm but this bathroom was down right frigid. Great frigid shower at 5:30AM.

The very short drive to Kennedy is a breeze. I love the Jet Blue terminal and quickly navigate to security. Only then do I realize I left my phone in the car. Ugh, proof positive it pays to arrive at the airport early if possible. I retrieve my phone from the car and return to security. For better or worse I am culled to a “special security lane” and the TSA officer tells me “wheelchair, you go to your left”. Yes, I am wheelchair man! I have no idea what to expect when I am pat down as is required. This can be lax in the extreme or akin to entering a maximum security prison. I was immediately annoyed by the TSA officer as I approached the body scanner. I was told to wait to the side and the officer in question was brusk. I am told to move to my left and go through a gate. The officer stood far too close and put his hand on my back. I hate it when people invade my personal space and never before has a TSA officer acted as this man did. I asked “please do not touch me”. I suppose he got I was annoyed and stopped me. “How do you expect me to pat you down if I am not allowed to touch me”. I instantly realized my mistake. It was foolish if not reckless to question TSA authority. The humiliation ritual must be enacted and followed without question. The fact this man was not going to be patting me down was beside the point. I went into humble, meek, and submissive mode. As it was early morning crush security took a while and my bag required extra screening. Apparently my jar of aquaphor cream caught the attention of the scanner. Aquaphor I was told is a banned substance. Another first. I have never had trouble with aquaphor. Regardless, there is unanimous agreement—I cannot board with aquaphor. Could I make a complaint? Theoretically yes. Practically no. Oh well, $20 down the drain and now I need to locate a drug store in Chicago. Aquaphor is a skin integrity must. More time will be wasted finding this cream.

So here I sit on an AirBus A 320 that was supposed to have wifi. It is not operational today as the plane is older and according to the flight attendant scheduled for multiple upgrades. So much for working on line and responding to student and professional email. Anyone that says travel is glamorous I suspect have not had much experience. Will end part one here. Part two will be how I do get into Chicago via the bus or subway.

Part Two

I landed safe and sound at O’Hare. Getting off the plane was very slow as there were many families with young children on the plane. Cannot get upset when little kids are flying and slowing the exit flow. Mass transportation was non existent. No public busses go from the airport to downtown. No accessible Shuttle Expresses busses exist and I am asked a question I often am asked when in an airport. "Can't you walk just little bit?". At this point I am immune and simply say no. As for the subway, the nearest accessible stop to my hotel is over a mile away. I have no idea if this information is correct. I had comparable issue with the fancy hotel I am in. I was guaranteed a roll in shower with a king bed. All rooms with a roll in shower have two queen beds and contradict what is stated on line and what I was told on the phone yesterday. This effectively makes a good sized room hard to get around. This is ever so typical. Hassles abound and slow me down. And to me that is the key to disability few get. Disability is a time sucker. First on the plane last off. Rooms description rarely reflects what is stated on reservation. Regardless I am happy to be in Chicago and looking forward to see my friend Alice Dreger whose work I deeply respect.

3 comments:

It's fascinating seeing the variety of responses. I'm a wheelchair user that can walk very short distances, but when I have my chair, I generally don't have my crutches with me unless I'm traveling with someone that doesn't mind carrying them for me. The hotel situations seem to be the worst...it's either two queen beds when I only need one, or it's only one queen bed when I'm trying to share a room with people other than my spouse. It's so frustrating!

Casey. It is amazing to me how differently one is treated if you can ambulate just a little. When I state I cannot walk at all the people the airline industry outsources to have no clue what to do. And who can blame them. They work for minimum wage and are poorly trained. As for hotels it is such a mixed bag and frustrating in the extreme.

It is an amazing difference indeed. On the flip side, when I state that I can walk short distances I'm treated as some sort of faker...it's really a no-win situation that's compounded by the poorly trained & underpaid workers.